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The Experience of Caregiving in Serious Illness

Explore emotional and interactional suffering faced by caregivers in illness. Learn action steps for better caregiving interactions and advocacy.

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The Experience of Caregiving in Serious Illness

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  1. The Experience of Caregiving in Serious Illness Debra Parker Oliver, PhD, MSW Professor of Family Medicine University of Missouri

  2. Emotional Suffering • Lived Moment- Nothing will ever be the same • Hidden Feelings: Anxiety, Fear, Guilt, Resentment • Unwanted transitions: roles, schedules, future • Anticipatory Grief: Lost dreams • Bittersweet waiting • Alone

  3. CaregiverInteractional Suffering Suffering as a result of an interchange with the health care system • 1. Lack of attention (Invisible) • 2. Understanding (not listened to) • 3. Communication (who& when to call, call back) • 4. Competence (making sure nothing goes wrong) • 5. Limitations (limitations of medicine)

  4. ACTION STEPS • Implementation of the TRIO Guidelines Focus on policies, practices, environment that lead to interactional suffering • Recognition of Social Work as Caregiver Advocate • Qualifications-Education/certification • Staffing standards: Once a month is NOT enough • Standardized caregiver assessments; depression, anxiety, health • Tested interventions focused on improving caregiving experience

  5. Debra Parker Oliver oliverdr@missouri.edu For additional information on the experience of caregivers and patients with serious illness see www.Dbocancerjourney.blogspot.com

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